David Oliver: Resuscitation orders and reality

Editor

I have read all the responses so far with interest.

It’s hard to disagree with much that’s been said.

Daisy Walters, Michael Stone and Kate Masters all from their own perspectives emphasise the importance of clear, proactive, sensitive communication with patients or their family caregivers and advocates – the more information and involvement the better. I also agree with Kate that the more and better this is done, the easier it may be for families to deal with subsequent bereavement and make sense of events around their loved one’s final illness. Both Michael and Kate allude to the importance of far more advance care planning and discussion not just of CPR but other aspects of care and treatment well before people present to acute hospitals in extremis.

Mr Stone is completely right to emphasise the importance of correct interpretations of Mental Capacity legislation and regulations and in particular giving adequate priority to the views of close family members in patients who lack decision-specific capacity. I am also grateful to Ms Masters for reminding the readers of the original ruling(s) which do not, as she emphasises say technically that no patient can be made “DNACPR” until a discussion has taken place. She does, however, remind us as I said in my original piece that judges have said that the presumption should be in favour of discussion and that futility, inconvenience or potential upset are not reasons in law to duck the discussion. And to both for pointing out that the rulings do no more than reinforce what legislation and existing good practice guidance state.

Nonetheless, my piece was about the imperfect world we work in and potential problematic consequences of the ruling.

Let’s take one or two things as givens.

First that it would be far better to have fare more care planning, advance care plans and decisions far sooner for more people with long-term conditions that will limit life expectancy or carry high morbidity and which risk acute hospital admission. Even for care home residents (median survival time only 15 months from entry) we don’t do this routinely – resulting in many avoidable conveyances and in-hospital deaths for residents. We do need a more mature and less sensationalist public conversation to allow this. But are the public, or the media ready for this? There is evidence to the contrary.

Second, that if a patient comes into hospital clearly dying, critically ill and at risk of dying that the patient and/or family need to know this. As part of discussing how ill the person is, limits of treatment including CPR must be discussed so long as there are family caregivers who can be contacted and want to engage or so long as the patient him or herself is able and willing to.

Third, that if during the course of hospitalisation, a terminal illness (e.g. aggressive metastatic cancer) is diagnosed then treatment options including CPR, place of future care and support, palliative therapies, must be discussed and documented.

Fourth, that if during hospitalisation, a condition leading to progressive deterioration or which has now neared end stage or affected swallowing becomes increasingly important, the staff need to discuss limits of treatment, not just CPR but artificial nutrition and hydration.

Finally, that if hospital staff do see patients with conditions that limit life expectancy and will lead to inevitable deterioration over months or years (for instance Heart Failure or Vascular Dementia ) they should use the contact with the hospital to initiate (though not finalise) personal care and support planning which is better continued in a community setting with primary and community care support.

I would acknowledge that none of these things are done as well as consistently as they should be.

However, my article wasn’t really about those scenarios so much as the person admitted acutely who is certainly ill if not clearly terminal or critical, who has no existing advance decision or CPR status and is either unable to decide for themselves or has no readily available advocate. i.e. Most patients on the acute medical take.

Now of course, technically, according to the letter of the judgements, doctors are not forbidden from documenting DNACPR until they have spoken to a relative. But practically, the message from the judges is clear – a presumption in favour of discussion, few excuses or exemptions for not discussing.

And practically, this will lead to one of two common scenarios:

First, doctors will leave the person “For CPR” until they can discuss it properly. As I argued, this will lead to numerous futile CPR attempts unlikely to be in the patient’s best interests.

Second, there will be major pressure especially when patients are moving from A&E or AMU to a ward to say “are they for ressus” doctor? Often from Nurses who need to know how far to escalate and who are the constant presence for grim attempts at CPR and rightly wanting to avoid misguided attempts.

The result? Rushed, perfunctory assessments of capacity and discussions of DNACPR very close to the person’s initial admission, often without them fully understanding it in order to “tick the box” on the form that CPR has been discussed. And often in a very busy, short staffed emergency floor.

Finally, in an acute sector where 9 in 10 hospitals are in deficit, 9 out of 10 cannot meet their own target nursing numbers, where up to 1 in 3 doctor posts are unfilled and where demand is rising inexorably, there will be “opportunity costs” : for patients and families while staff spend so much time on DNACPR that it compromises other aspects of care and becomes a privileged “overvalued idea” among a range of other necessary discussions and treatments.

Finally, unintended harms are inevitable as more people are subjected to CPR who would formerly have been “not for”. Relatives’ concerns and need to know are important but protecting patients from harm and indignity have to be paramount. And clinical staff care just as much about these issues as any other party.

David Oliver

On the issue of 'Resuscitation orders and reality' I feel it's important to have both sides of the medical curtain represented.

DNACPR decisions often signal that someone's life is coming to an end. It might not be imminent, but the fact that CPR will not work is quite often one of the signs. For a patient, the value in being given the chance to know this cannot be underestimated. The chance to make decisions where they would like to die, and as far as possible how. The chance to say what is important to them, and who. Even the chance to say, 'you know what doctor, I trust you and I don't really want to talk about it.'

In an ideal world these decisions would be made and the discussions had way in advance of someone being admitted to A&E and may even prevent that admission happening. That would, it appears from Dr Oliver's piece, be a win:win situation, and is something I campaign for. But the reality is that too often hospital is where it happens.

I would think that patients and families consider the alien environment of a busy hospital ward, or frenetic A&E, pretty much the worse place to be faced with this discussion, probably just as much as the doctor finds it hard to place a high priority on the discussion with all the other pressures they have. But if this is where the decision is made, this is the place the discussion must happen. The chance to discuss the issues still has the potential to open up important choices that the lack of discussion denies. This could be the chance to be in the place you want to be, with the people you want to be with, when your life or the life of someone you love comes to an end.

I feel it important to note that none of the recent legal judgments state that a patient must be left for inappropriate CPR or that the decision must be delayed pending the discussion. in my dad's judgment it states there is a 'presumption in favour' of discussion and there must be ' convincing reasons' for the discussion to not happen. At para 54 of the judgment the judge states this:

"54.There can be little doubt that it is inappropriate (and therefore not a requirement of
article 8) to involve the patient in the process if the clinician considers that to do so is
likely to cause her to suffer physical or psychological harm. There was some debate
before us as to whether it is inappropriate to involve the patient if the clinician forms
the view that to do so is likely to distress her. In my view, doctors should be wary of
being too ready to exclude patients from the process on the grounds that their
involvement is likely to distress them. Many patients may find it distressing to
discuss the question whether CPR should be withheld from them in the event of a
cardio-respiratory arrest. If however the clinician forms the view that the patient will
not suffer harm if she is consulted, the fact that she may find the topic distressing is
unlikely to make it inappropriate to involve her. I recognise that these are difficult
issues which require clinicians to make sensitive decisions sometimes in very stressful
circumstances. I would add that the court should be very slow to find that such
decisions, if conscientiously taken, violate a patient’s rights under article 8 of the
Convention. "

(full judgment here https://www.judiciary.gov.uk/wp-content/uploads/2014/06/tracey-approved.pdf )

I believe there's an urgent need for a national campaign to inform patients about the realities of CPR, how it fits into the choices on where you want to die, and how you want the end of your life to be. This is something else I am campaigning for.

I'm proud of my dad for taking on - and winning - the legal case to secure the right for patients to know when a DNACPR is being instigated. It was only necessary because the best practice that always existed was too often ignored, leaving families with a lifetime legacy of wondering if more could have been done for their relative, and quite often with mistrust in the medical profession, because of a hidden DNACPR decision. I've been pretty shocked since the case ended in June 2014 that there's still a need for me to campaign for the discussions to happen, and have sought the views of doctors and nurses - including Dr Oliver - as to why? and how can we make things better?

Like most patients, I wish so much that I had a magic wand to resolve the strategic and financial issues that we hear about on the news, and that doctors face the reality of every day; but I don’t.

Until patients get the information they need to give them the confidence to start the conversation themselves, the responsibility for initiating the discussion lies with the doctor making the decision. The importance of this discussion to their patient and the patient's family cannot be understated.

I will continue to campaign for information that makes this small but important part of their end of life care easier for patients, less of an issue for busy doctors, and basically less of a scary beast all round.